Life After an Autism Diagnosis

Four years ago, when a neurologist diagnosed Judith Ursitti's son, Jack, with autism, she packed his baby blankets in a box and gave them to Goodwill.

"Jack is a different boy than the engaging baby he was," Ursitti explained of her son, now 6 years old. "Throwing away the baby things for me symbolized that our lives were changing."

Such is the turmoil faced by the families of the estimated one out of 150 children across the country diagnosed with autism.

Autism Spectrum Disorder has garnered many names.

Some call it "the unwanted guest" or a "life sentence." Some say it is a genetic disorder; others call it an environmental illness. There is no scientifically proven cause or cure for autism, and although numerous treatments are available, no road map is given to indicate what option is best for each child.

And because many insurance companies do not cover the cost of treatments for autism, many parents forgo them because they cannot afford to pay.

"There isn't one stream that families find themselves in where they get carried along," said Dr. Jon Markey, a child psychiatrist at William Beaumont Hospitals. "Life after diagnosis is normally a haphazard unfolding and everything is learning as you go."

Ursitti recalled feeling uncertain about what the next step should be after hearing her son's diagnosis. She said their doctor had told them that Jack's autism was a lifelong illness. Unwilling to accept this answer, she scoured numerous Web sites for more information.

Ursitti took Jack to another specialist, who recommended applied behavior analysis, a form of treatment aimed to teach a child with autism basic language, social and behavioral skills through structured repetition. The Ursittis pulled up roots from their hometown in Texas and headed to Massachusetts to begin applied behavior analysis for Jack.

"All the dreams we envisioned of staying in Texas, our child being valedictorian or a star athlete like his father, we had to let that go," said Ursitti.

With such a broad, expensive and increasing diagnosis, support and care for each autistic child depends on the family's unique financial and emotional dynamic. Some families have had to rethink dreams, move across state lines, change professions and sometimes alter a marriage when adjusting to life with an autistic child.

Becoming the Advocate

For some families, the diagnosis was a call to action.

Click Here to Visit the OnCall+ Autism Center and Get Answers From Top Autism Experts

In 1999, Kim Stagliano and her husband, Mark, of Bridgeport, Conn., received a double diagnosis. Doctors told the Staglianos that their two daughters Mia, who was 3 years old, and Gianna, who was 4 years old, had autism.

"Immediately we thought, 'what can we do to fix this?'" said Stagliano.

Within the folder packed with pamphlets that Stagliano received from her doctor, she said she tried to find a list of treatments or educational services, but failed.

Stagliano recalled that the only advice she received was in a pamphlet that read: "There is no cure for autism. You can only hope to give your autistic child the most comfortable life possible."

Stagliano connected with many families whose children also had autism to better understand her daughters' diagnosis and treatment options. By the time her third daughter was diagnosed with autism, Stagliano decided to share her autism experience with others.

Hear Kim Stagliano tell her story.

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